New to LS - start here
Posted , 217 users are following.
Below are various resources for Lichen Sclerosus from leaflets to useful web sites and recommended discussions. You may wish to reply to this discussion as a way of introducing yourself to other forum members and giving a brief history of your situation.
There is a patient leaflet on LS here which also has related tabs with more information, support groups etc.
https://patient.info/health/lichen-sclerosus-leaflet
Below are other useful websites:
http://www.lichensclerosus.net/ - Information to help manage LS
http://www.lichensclerosustreatment.com/ - webinar from Dr Goldstein. Lichen Sclerosus The Unspoken Pain
http://caredownthere.com.au/ CareDownThere is written by a team of Australian Health Professionals with special expertise in treating vulval disease.
http://lichensclerosus.org/ The Association for Lichen Sclerosus and Vulval Health
Includes a page of Men only discussion - http://lichensclerosus.org/men-only-2/
http://www.bssvd.org/ British Society for the Study of Vulval Disease
This includes a "Find a clinic" service. The full list is here:http://www.bssvd.org/images/stories/documents/database%20of%20members%20of%20vulval%20service%20edited.pdf
Discussion on users' thoughts on causes of LS
https://patient.info/forums/discuss/causes-of-lichen-sclerosus--271583
Other discussion groups that may have relevant discussions to LS:
https://patient.info/forums/discuss/browse/alternative-and-complementary-medicine-3763
https://patient.info/forums/discuss/browse/autoimmune-disorders-3827
39 likes, 367 replies
Bitchin_itchin Emis_Moderator
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groky Emis_Moderator
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Site has calmed me quite a lot. When diagnosed I was given a prescription for some strong cream and told to use it twice a day for 10 days. After the ten days I still had some symptoms. I continued to use the cream a few more days. When I looked at my self in the mirror the area between my bum and bits had turned white. Shocked me. I don't itch, and the pain is gone. At first the pain was bad. It is still all new to me. Thank
You to all the ladies that have shared their stories, so helpful.
Morrell1951 groky
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groky Morrell1951
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Morrell1951 groky
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groky Morrell1951
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altogether. Would my labia start fusing together. Had to talk myself down with the fact it's been diagnosed early and now this
Site with so much great support and info. It's hard not to stress especially when stress can trigger things.
Morrell1951 groky
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And think of sugar the same way you'd think about sugar in your car's gas tank. Make a little go a long way and say no to the big servings.
groky Morrell1951
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Will help me in the long run with this. It's just a lot to deal with at first.
Bergsca Emis_Moderator
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Now that I have researched to death, I realize I have always had LS. That no one ever understood it and that at 28 underwent a surgical procedure to fix a hooded clitoris unnecessarily as it was probably just disappearing from the LS. And my vulva that was very flattened was also the result and a bike injury had nothing to do with it. All those years with no diagnosis skirting around the disease and all those years of suffering and marital strife if only we had of known. My poor husband thinking I am avoiding him and me trying to get out of intercourse as much as I could for fear of pain. All unnecessary.
Today I see there is a link with thyroid as I have hypothyroidism. A link to Vitiligo, a link to autoimmune. I now do believe there is oxidative damage to lipids and protien enzymes in our bodies and the cure has to be found in these areas. Studies reveal Enzymatic Antioxidant defence in LS is disturbed. Here lies the key. I have read so much on this. Using Antioxidants may be the way to go in the future and would love to know if anyone has tried going this route for healing.
i am using Clobetasol propionate 0.05% and alternating with estrogen cream for flare ups and baking soda, epsom salt sitz baths, coconut oil, Emu Oil and Vaseline in between, but it's just a vicious cycle that keeps recurring year after year if you don't stay on top of it. I hope somewhere through all these exchanges something safe and healing can be found. If am so happy to have found this group. I read every single word.
Morrell1951 Bergsca
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Morrell1951 Bergsca
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Morrell1951 Bergsca
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Bergsca Morrell1951
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Morrell1951 Bergsca
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You're very fortunate to have found your one man so young and grown together.
lizziewizzie Morrell1951
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